Newly diagnosed with Endo - Question

[Hightower13]

Hello, I'm 27. I was diagnosed with Endo last Thursday after Lap and am now waiting to see Dr at Hospital in 3 weeks time as I had a laparoscopy, hyseroctomy (camera ?), D and C, smear and coil inserted. After my op, one of the surgeons came to me to say I had Endo and I asked him if I would have it removed and he said no, the coil should help and I'll come back in 3 weeks to see someone. Just wondered by what the surgeon said whether my Endo is not severe/ stage 1? This diagnosis has really affected me in a bad way and I cant stop crying and worrying. I am worrying as I don't know how bad it is etc as I can live with the bad period pain, its the painful sex and possible infertility issues as I'm single at the moment and all I live for is having a family. So I just wondered whether you all thought it is not too bad by the sounds of it? I just need some advice and support please as my friends and family are not being supporting as they believe Endo is 'not life threatening' so I have nothing to worry about! x

[Hightower13]

Thank you for your reply. I had my op Thursday morning - Do u think my GP would have any correspondence already as im due to go to my surgery later? x

[Hightower13]

okay thank you for your help ill keep you updated x

[confusedandworried]

Hi, I'm sorry to hear of your experience and also the lack of empathy your family and friends appear to be showing. Sadly it is more likely, in both the case of your surgeon and family and friends, due to a lack of understanding about endometriosis.

I suspect your surgeon was not not an endo specialist and unfortunately endo is complex and comes in different forms meaning a general gynaecologist more than likely lacks the experience to (a) recognise endo in all its forms and (b) surgically excise it (ie cut it out). General gynaecologists' interests lay in the reproductive organs but endo unfortunately can effect other organs too such us the bowel, bladder, the peritoneal lining and, although rare, even the kidneys, lungs and brain.

Given endo is a complex disease specialist accredited endo centres have been set up nationwide which have a specialist teams consisting of endo gynaecologists, colorectal surgeons, urologists and pain management specialists. If a person is suspected of having or have formally be diagnosed as having endo they have the right to be referred to a centre of their choice. A list of these centres can be found at the following website by clicking on the tab "Endometriosis Centres" and then "BSGE Accredited Centres":

bsge.org.uk

Unfortunately it is possible your GP and even gynaecologist has not heard of these centres - my GP hadn't until recently when I printed off the list and gave it to her! Please bear in mind most are NHS but I know of at least one that is private only (Elland Spire Hospital) so if you at some stage need to be referred to one unless you have the funds or private health insurance ensure they are an NHS accredited centre.

With regards to treatment options unfortunately there is currently no cure for endo and for reference there is research now to suggest it may be an autoimmune disease.

The coil is considered one treatment option, although in the main it tends to dampen down symptoms more, though can slow endos progression also. It is worth trying this first to see if it provides you with the relief you need.

The gold standard of surgical treatment is excision surgery (ie cutting it out) as opposed to burning it off with a laser (though please bear in mind some surgeons use the laser to cut with too). Burning endo is less effective as it tends to just remove the top rather then remove it from the root meaning, much like a weed, it is more likely to grow back. However, as there is no cure even with good excision surgery endo can, though not always, grow back and it's often said this is after approx. 5 years.

Unfortunately it is really important that women reduce the number of surgeries they have in their lifetime as apart from the usual risks associated with any surgery, with abdominal surgery there is the risk of scar tissue and adhesions forming which can cause pain and other issues in themselves.

Therefore trying hormone based treatments such as the coil early on in diagnosis is not necessarily a bad thing provided a woman's condition is monitored and symptoms managed and is not so advanced as to cause further complications (eg endometriomas on ovaries aka chocolate cysts which could rupture and spread endo and/or cause adhesions, or adhesions forming resulting in organs being stuck together). Please note I am not trying to scare you by saying this, just make you aware that these are possibilities in advanced stages of this disease and a professional and ethical gynaecologist would have told you if he/she saw these issues I am sure. If in doubt you can request for a copy of your notes for a nominal charge.

As endo is regarded as being oestrogen driven woman can also help themselves by following the endo diet as strictly as possible. I found that that following this combined with daily exercise and reducing my stress levels where possible reduced my symptoms to a more manageable level for a good number of years before requiring treatment again. If you search the Internet or even this website you will find more information on the endo diet.

With regards to your concerns regarding fertility unfortunately this is somewhat of an unknown. For some women it can cause fertility issues. However equally other women do not have issues conceiving. There is evidence to suggest the more advanced the disease and if the endo is deep infiltrating rectovaginal endo then this is likely to make it more difficult to conceive. There is a woman on this site, called Lindle, who has recently posted in detail about rectovaginal endo and its worth reading as so very often women with endo have to educate themselves rather than rely on their GP's or the so-called specialists.

Unfortunately I know from personal experience and from reading others' posts on this forum that the myths still exist ranging from "its normal, deal with it" to "a hysterectomy cures endo" or "getting pregnant cures endo".

For reference hysterectomy rarely cures endo in that endo may be on other non-reproductive parts of the body such as those I mentioned above meaning if this isn't thoroughly removed it is likely symptoms will continue to exist as the endo is still there. If you'd like to know more about this again Lindle has posted on here regarding this subject quite recently so search and you will find this.

Furthermore, pregnancy also is no guarantee of a cure either, although there are some reported cases of symptoms either reducing or being eradicated entirely after pregnancy. However, in the main symptoms are merely dampened down during pregnancy only to return afterwards.

With regards to the lack of understanding your family and friends have shown I know how difficult that is having experienced it myself. However look upon it as an opportunity to educate them and indeed spread the word so maybe one day this horrid disease will be given the time, attention and resources is so desperately needs.

Yes, they're right it's not "life threatening" but it can for some women be "life debilitating" effecting their physical, emotional, psychological and social well-being. Are we suffers not entitled to at least the opportunity of having an improved quality of life? It can have wider implications for those around us also, eg our partners who also live with the ramifications of this disease and limitations it may place upon us. This is not a disease that should be pushed under the carpet and such ignorance needs to be met with education!

I hope this helps and doesn't scare you more. I know in the early years of my diagnosis the more I read the more hopeless and helpless I felt so I steered away from trying to learn more. I trusted the so-called professionals and took all the pills and treatment options they threw At me often knowing little about what they were doing to me. It was not until many years later I realised the importance of educating myself and actively and proactively engaging in my own treatment plan to ensure I received the best treatment available to me. I encourage as many women as I can to educate themselves on this disease as it is necessary and it can also be both liberating and empowering to do so.

I wish you all the best, x